Help: Hi, I've just been reading your... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Kimi9
Kimi9
23 Replies

Hi, I've just been reading your posts and I also have similar symptoms. Also, some of you have referred to CREST which is a term I first heard on this site recently. I've got a few other medical conditions which I never thought, and has never been mentioned by GP could be connected to my Raynauds.

I've been reading up on CREST and just curious if any of my other problems could be connected?

So here goes, with just a few.

I also get severe pain in my lower leg and foot when I try to lie down, and I also have quite a few 'fatty' looking lumps on this leg also.

I have digestive problems and have recently been diagnosed with Oesophagitis, I get a burning sensation when eating some foods and find it difficult to swallow and am on Omeprazole.

I have also read that lung problems can be connected. 2 years ago I was also diagnosed with COPD, Emphysema. I can't lie down flat due to this as I have difficulty breathing if I do. I have a Braltus inhalator to use each morning to open my Airways and a Salbutamol pump to use throughout the day.

I also have Hyperthyroidism and am currently taking Levothyroxin for this.

I also have an autoimmune disease called ITP, I have regular blood tests to monitor my Platelet levels as they were very low previously (down to 10) and I was in hospital for 8 days until this was stabilised, I was then on Prednisolone for about 4 months. s

Does anyone think that and of these could be connected, to CREST, Scleroderma?

23 Replies
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Kimi9

I also have an eye condition which I have three different sorts of creams and drops from the hospital, my Optician has listed this as Sjogren's syndrome.

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LucyJean

Hi there, CREST stands for five of the symptoms associated with what is now usually referred to as Limited Scleroderma. C = Calcinosis, which are calcium deposits that are usually found in the hands, but can also occur more rarely at other sites. They look like white lumps under the skin and when they discharge they are like white toothpaste or hard lumps of calcium. R= Raynauds, poor circulation in the periphery, usually hands, feet and nose. E = Oesophageal dysfunction (in America it is spelt with an E), this is usually dysmotility, difficulty swallowing and lack of peristaltic wave that helps food move through the gut, which can also lead to reflux. S = Sclerodactlyly, localised thickening and tightening of the fingers. T = Telangiectasia, which are inflamed blood vessels - that look like spider veins when they are present in the skin close to the surface. They can be found anywhere but commonly on the fact, hands, chest and lips.

All of the symptoms you describe seem to be related to the syndromes you are already diagnosed with...COPD, hyperthyroidism, ITP etc. Scleroderma is an autoimmune condition and you already have several autoimmune conditions (hyperthyroidism, ITP). When the immune system is active it doesn't always produce symptoms that fall into one distinct disease or another so you can see overlap between conditions.

It doesn't sound like scleroderma but the only way to find out is with some very specific blood tests and a trip to see a Rheumatologist used to dealing with the condition.

All my best

Lucy x

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Kimi9
Kimi9
in reply to LucyJean

Thanks Lucy you've been a great help. Much better than the docs anyway, they just seem to give a diagnosis and some medication and send you on your way. No information provided so I'm always researching and trying to find out more for myself.

Thanks for replying Lucy.

Toni

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Irene55
Irene55
in reply to Kimi9

I found also that GPs generally don't know anything about autoimmune illnesses like Scleroderma. It is very rare to find one that does. So it is often a long and laborious job to be diagnosed.

I hope you get some proper answers soon.

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Kimi9
Kimi9
in reply to Irene55

Thanks Irene

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Hidden
Hidden

I also have digestive problems to do with my gullet, I have burning feet 24/7 I get blood monitoring every 4 weeks this has gone on for 3 yrs, my nurse said the scleroderma was possibly responsible for my digestive tract problems and the lupus could have caused my heart and lung inflammation and fluid.

To be honest I feel like a Guinea pig and basically do they even fully understand mctd or raynoids or sjorgrens or rheumatoid arthritis or myosytis or even fibromyalgia, cause I always get conflicting information and every condition I have has never ever been explained to me by any of the team I'm under, so I just take my medication, go for my blood monitoring and live day by day and hope for the best.

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Kimi9
Kimi9
in reply to Hidden

Yeah me too Amelda, def feel like a Guinea pig and a pin cushion. Same thing really, here's your diagnosis, here's your medication, figure the rest out for yourself, oh and come back every couple of weeks so we can take more blood

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Hidden
Hidden
in reply to Kimi9

I totally agree with you, every I know iv had to find out for my self but nearly all the listed, lupus, scleroderma, sjogrens, can effect your organs so why hasn't this been explained, everyone just presumes its aches and pains and swelling, it's a joke as far as I'm concerned, I wait to see my consultant and I'm in and out, more bloods more tablets and no explanation as to why, or if it will help, what next if this doesn't work, talk about yr life in their hands, this is why this site exists, because everyone of us on here needs answers and support that we should be accessing through our nhs services but were not, so we come on here, we are all just Guinea pigs and they don't understand these conditions either, as we're all individuals cases that are all affected differently to an extent.

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Kimi9
Kimi9
in reply to Hidden

I didn't know it can affect your organs? Oh my god, why don't thdh tell us this stuff? Unbelievable. Most things I know I've found out for myself, and I'm learning more from you guys on here.

Shouldn't be this way.

I had more bloods taken on Friday, don't even know what for this time tbh, or even if I'll get the results, it's so frustrating

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Hidden
Hidden
in reply to Kimi9

I understand how u feel sweetheart, I woke up on a Coronary care unit 2016, I'd been diagnosed with rheumatoid arthritis and sjorgran syndrome and had all my medication etc june 2016, then October 2016, I woke up early hours in the morning and I had chest pains and difficulty breathing, it felt like severe trapped wind, it was fluid and inflammation on my heart and lungs, my liver enlarged, I woke up on oxygen, a drip with saline also having a blood transfusion and I was Catheterized I thought I was going to die I was absolutely terrified. So yes these conditions are complicated and complex, all they told me was that what had happened to me was very rare and very complicated and my consultant asked if would see someone else whom specialised in my condition as he didn't. And I'm still here to tell you. X

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Kimi9
Kimi9
in reply to Hidden

Omg that's horrendous Amelda, thank god you are still here. Did they say what caused it, sjorgens?

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Hidden
Hidden
in reply to Kimi9

No, all they said was that my body was attacking its self and I was also diagnosed with mixed connective tissue disease as well as the rauynoids and rheumatoid arthritis and sjorgens the mixed connective tissue is, scleroderma, lupus and myosytis,.

I'd had fibromyalgia from the 90s and struggled to get help and support and I was in and out of work due to my dibilitating symptoms then out of the blue my symptoms started to change and I ended up at accident and emergency, fortunately I was seen by an exceptional doctor who diagnosed me with rheumatoid arthritis and rang an on call rheumatologist to come and see me from a different hospital.

2 hrs later he came and verified his diagnosis and gave me a steroid injection to help ease the pain and swelling.

2 was later I got an appointment for rheumatology, and spent 4 hrs of test examinations etc and left with all my medication. That was june 2016, then everything went pear shaped in the months to follow and then u know the rest.

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Kimi9
Kimi9
in reply to Hidden

We sure got some messed up bodies you know. Get one auto immune illness and there's more lurking in the wings, coupled with limbs, eyes, hands and pretty much everywhere in between

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Hidden
Hidden
in reply to Kimi9

Yes I'm afraid so, but with support and knowledge it helps us day by day.

Good luck with your blood tests, be sure to let me know how u get on.X

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Kimi9
Kimi9
in reply to Hidden

Yeah it certainly does, knowledge and support are the key.

Thanks Amelda, take care

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reglois

I am on Prednislone and have been for 18 months, I have CPFE plus Brochiectasis plus Systemic Scleroderma (internal), I use a wedge pillow because of acid reflux, helps greatly with the breathing too, and am on oxygen 18 out of 24 hours, right bind. My Scleroderma was diagnosed with in a month of me first stating the symptoms but of boy did I go through the mill with tests and CT scans

My daughter is also on Prednisolone but only started recently, she has suspected Sjorgens Syndrome which sound very like yours, severe inability to swallow foods a hard lump like feeling in her salivery glands, (little operation will be the next thing to test a few samples of the minor glands in her inner lips) pain in tendons, feels like it is in the joints, severe Raynauds symptoms, even in warm weather if she stands still, loads of tests being run, we are lucky living in France as they are very very thorough here. All auto immune syndromes are a pig to diagnose with any certainty

Please be careful if on Prednisolone to limit salt consumption especially on high dosages..

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Kimi9
Kimi9
in reply to reglois

Thanks for the replies. It's sometimes just nice to know that you're not the only one with so many diagnosis for different things. I've got problems with my one wrist which is painful most of the time and my fingers lock, so my hand is stuck in like a claw shape, doesn't last long but very painful when it flares up. GP said I've got tendonitis in my wrist so wear a brace support at night, and I've also got trigger finger but there's nothing they can do except painkillers which I'm already on.

I've got an adjustable bed now which helps massively, I know sleep at about a 45 degree angle and also adjust the leg support as my one shin is very painful at night unless it's elevated.

Everything just seems to be hard work, and trial and error for us all to find out what helps alleviate symptoms.

I'm still struggling with my Raynauds, even now when the weather is warm, I'm still getting multiple flare ups per day and am still carrying gloves around too.

Definitely sounds like your daughter may have Sjorgens so worth getting it checked out.

Take care all, and keep warm!!

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Sanmateogirl107

PROBIOTICS, AND YOGURT AS WELL AS TUMERICK AND PEPPER. GO TO AN IMMUNE SPECIALIST, PAIN DOCTOR, RHEUMATOLOGIST. ASK FOR REFERALS NOW. HOPE THAT HELPS YOU. JULIE

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Kimi9

Thank Julie I will do. There's just so much I don't know, I'll speak to them

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MFC911

Hi Kimi,

Sorry to be an age in replying.

Having read your list of problems (poor thing. I know only too well what it's like). I would say that in my unqualified opinion that you have something similar to me. That is : "Systemic sclerosis". I would suggest that you get your GP to refer you to a rheumatologist as quickly as possible, you can plan out a treatment regimen. Once you have established a true and full diagnosis (it took them ten years with me) then you can be treated properly which will obviously make you much more comfortable.

Also. Don't forget you are entitled to both PIP & ESA Benifits. Make sure you get them. It will take time, it will be frustrating but you will get there in the end. The one sentence that counts overall for doctors & Benifits agencies is : DO NOT TAKE NO FOR AN ANSWER.

Good luck. I hope with the correct meds you will feel better.

Best. Mark.

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Kimi9
Kimi9
in reply to MFC911

Thank you so much for your reply Mark. This sometimes feels like an uphill battle, getting a nowhere fast. Your advice is really helpful thank you, I'll see if I can get a referral and take it from there

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positivedaybyday

Hi,

It's like a lottery. I have acute systemic sclerosis ( scleroderma). Although a terrible start I was fortunate to go to a private German Dr whilst on holiday in Spain for 3 months. His 1st report showed my whole body was inflammed after 2 bouts of flu Dec 2016 & to give it time as the body will most probably right itself. Before I flew back to the UK I was a mess. I lost a stone in weight, could hardly walk & in so much pain. Luckily I found the strength to see him again. This time his diagnosis was spot on & he told me I needed urgent medical attention NOW! I flew back to the UK using the Disability Assistance at the airport. I went straight to my GP with all my test results & a letter from the German Dr. My own Dr had never heard of this rare condition. My Dr referred me to our local hospital, who finally came back after 3 weeks to say they didn't see me as an urgent case. They couldn't see me for another 4 months! I was in SO much pain & didn't know what to do!!! Luculy for me my suster worked at a hospital 40 monutes away & foyndIf I hadn't found a fantastic consultant for me who is renowned for her work in this area. I saw her on A Friday & she admitted me on the Sunday as soon as a bed was free I don't think I would be here now without this referral. Being under the right team is essential. I had all the information, leaflets galore. It was very frightening as if the disease was not halted what part of the body wasn't affected. I was told that I would die if the skin thickening didn't stop. By Nov 17 microphenolate wasn't halting the condition, so I was given the option of stem cell treatment. I had this after passing a range of tests to make sure my organs were OK. To my relief I passed. I started the process March 2018 & had the gruelling stem cell treatment May 2018. The problem for all of us is that each case is different & very complex. I have been SO lucky & now feel so much better. I can walk again, stand in the shower & i'm starting to get my life back. I am stiff in the morning but that is nothing to being so close to death. The main thing is to try & remain positive. I always told myself I will beat this awful disease, don't get me wrong I have had some very low days! Having the teams support on this journey has been incredible & even having to wait 5 months for counselling has paid dividends. I have learnt to pace myself, listen to my body & mostly not to be hard on myself.

Good luck everybody & big hugs from me as we all need support in different ways. This site is brilliant!! Xxx

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Kimi9

Hi positivedaybyday, wow you've been through the mill. How lucky you were to have found that German Dr when you did. You've been through such a horrendous ordeal, I'm so glad they admitted you and you finally had the right treatment, and it's so positive to hear that you're feeling so much better, and are now starting to get your life. Yours is such an inspirational story, thank you so much for sharing that. I'm loving your positivity, and upbeat attitude towards life. Best wishes towards your continued health

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